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Disclaimer:'MS Views and News' DOES NOT endorse any products or services found on this blog. It is up to you to seek advice from your healthcare provider. The intent of this blog is to provide information on various medical conditions, medications, treatments, for your personal knowledge and to keep you informed of current health-related issues. It is not a substitute for the advice of your physician. Should you or your family members have any specific medical problem, seek medical care promptly.

Saturday, May 12, 2018

New approval for Gilenya (fingolimod) addresses strong unmet need for younger patients, who often experience more frequent relapses than adults with multiple sclerosis (MS)(1)

- In a landmark controlled Phase III study of children and adolescents (ages 10 to less than 18) with relapsing forms of MS (RMS), Gilenya reduced the annualized relapse rate by approximately 82% vs. interferon beta-1a injections (p< 0.001)(2)

- Gilenya is the most prescribed oral once-daily MS disease-modifying treatment, with a global exposure of more than 231,000 patients since its initial approval for adults with RMS(3)

EAST HANOVER, N.J., May 11, 2018 /PRNewswire/ -- Novartis today announced that the US Food and Drug Administration (FDA) has approved Gilenya® (fingolimod) for the treatment of children and adolescents 10 to less than 18 years of age with relapsing forms of multiple sclerosis, making it the first disease-modifying therapy indicated for these patients2.

This approval expands the age range for Gilenya, which was previously approved for patients aged 18 years and older with RMS. Gilenya was granted Breakthrough Therapy designation by the FDA in December of 2017 for this pediatric indication.

"We now finally have an FDA-approved treatment for children and adolescents with relapsing MS," said Dr. Brenda Banwell, Chief of the Division of Neurology at Children's Hospital of Philadelphia, who served as co-Principal investigator of the pivotal study that supported the pediatric approval. "Repeated relapses are more common in young people with MS than in adults, so this is heartening news for patients and their families."

Thursday, May 10, 2018

Many people with MS experience episodes of dizziness, which can make you feel lightheaded or off-balance. Some also have episodes of vertigo. Vertigo is the false sensation of whirling or spinning of yourself or the world around you. According to one report, about 20 percent of people with MS experience vertigo.

Dizziness and vertigo contribute to balance problems, which are common in people with MS. Ongoing dizziness and vertigo can interfere with daily tasks, increase the risk of falls, and can even become disabling.

What vertigo feels like

Vertigo is an intense sensation of spinning, even if you’re not moving. It’s similar to what you feel on a twirling amusement park ride. The first time you experience vertigo can be very unsettling, even frightening.

Vertigo may be accompanied by nausea and vomiting. It can continue for hours, or even days. Sometimes, dizziness and vertigo are accompanied by vision problems, tinnitus or hearing loss, or trouble standing or walking.

Causes of dizziness and vertigo in MS

The lesions that result from MS make it difficult for nerves within the central nervous system to send messages to the rest of the body. This causes MS symptoms, which vary according to the location of the lesions. A lesion or lesions in the brain stem or cerebellum, the area of the brain that controls balance, may cause vertigo.

Vertigo can also be a symptom of a problem with the inner ear. Other possible causes of dizziness or vertigo include certain medications, blood vessel disease, migraine, or stroke. Your doctor can help you rule out other possible causes of vertigo.

Wednesday, May 9, 2018

I never intended to share so much of myself with readers when I first created An Empowered Spirit, to reveal my hidden feelings, experiences, hopes, and dreams. I know it’s something good writers are supposed to do but it was difficult for me. Then I read a book that forever changed me, Elizabeth Lesser’s “Broken Open.” Her words gave me the courage to be frank, open and honest in my writing. In return, I’ve been rewarded with readers who tell me that my work as a health advocate has helped them feel less alone, more empowered and forever grateful.

“Every catastrophe can hand us exactly what we need to awaken into who we really are.” ~Elizabeth Lesser

I’m about to break myself open again for a good reason.

I recently relocated to a new area of N.J. where I know almost no one. Being a freelance writer can be a lonely profession, so in my quest to meet new people I joined a wonderful organization called B.I.G. (Believe Inspire Grow) whose mission is, among other things, to help women live the way they were meant to live by providing inspiration, tools, community, and a whole lot more. I’ve met many wonderful, inspiring women and attended some fascinating and informative presentations.

The new guideline aims to help clinicians choose among as many as two dozen potential therapies which, it is hoped, will delay disease progression, and help more patients avoid fearsome consequences like severe disability and reduce life expectancy. But doctors also face the challenge of limited follow-up for many of these drugs, one of which was recently voluntarily removed from the market due to side effects.

A new practice guideline published by the American Academy of Neurology on April 23 attempted to sort out recommendations among an explosion of drugs for multiple sclerosis which are considered to be disease-modifying therapies (DMTs) which have been approved in recent years. The guideline, which discussed clinical questions such as choice of therapies, as well as strategies including switching or stopping DMTs, was published during the Academy’s annual meeting in Los Angeles.

The guideline discussed 17 FDA-approved medications, and also made a weak recommendation regarding off-label use of six other drugs. (Patients may also have to take other drugs to treat their symptoms, which DMTs are not intended to address).

The cornucopia of new medications, at least seven of which have only been approved since 2010, has its origin in immune strategies.

“If you trace it back to the very first FDA-approved medicine, interferon in 1993, the scientists knew MS had something to do with the immune system,” said Alexander Rae-Grant, MD, professor of medicine at the Cleveland Clinic Lerner College of Medicine, and lead author on the article.

Another older drug, glatiramer acetate, was approved in 1996. “It is like a molecular mimic; it confuses the immune system into attacking the medicine, because it looks like myelin,” the substance that surrounds nerve cells, said Rae-Grant. “We know everything there is to know about that medicine.

“Since then, we’ve become much more targeted in our approach, and we’ve adapted some medications used in cancer populations, as well as rheumatology,” he added.

Head-to-Head Clinical Trials Urgently Needed

But much less is known about some of the newer medications, leading the members of the guideline committee to make recommendations about the need for clinical trials in areas like comparative effectiveness and pregnancy-related issues. And prior to just last year, with the approval of ocrelizumab, there was no DMT for the primary progressive form of MS. (A classification system for several varieties of MS was revised in 2016).

The uncertainty some clinicians may experience is illustrated by the voluntary withdrawal from the market of one drug, daclizumab, which was initially referred to in the guideline, according to Rae-Grant (daclizumab was first approved in 1997 for transplant patients).

Neurologists are hopeful that the new therapies will be life-changing for some patients. Perhaps the most feared consequences of MS are severe disability and a somewhat reduced life expectancy.

“It used to be that about half of the patients would not be able to walk independently after about 25 years. But we don’t have a lot of long-term data on the MS population,” noted Rae-Grant.

“If we go back to earliest therapies, some cohorts have been followed for 20 years. But some of the new DMTs have only been available for two-to-five years, and disease progression is typically measured by relapses which occur over two to three years,” explained Ruth Ann Marrie, MD, PhD, professor at the University of Manitoba in Winnipeg, and co-author on the article. “So it’s difficult to say what a new therapy is going to do for somebody 20 years from now.”

But neurologists are hopeful that patients will experience some long-term benefits, including a delay of progression. In determining how to do that, the experts debated questions like whether to prescribe the strongest therapies first, or to switch to them if less potent drugs stop working.

Simple gestures such as picking up the phone, walking, eating, and drinking require messages from the brain to the muscles and nerves. Messages throughout the body are sent via nerve synapses. When these synapses are unable to connect, the messages fail.

Nerves are protected by a fatty myelin sheath. As MS attacks and progresses, it destroys these sheaths and leaves the body vulnerable.

MS can be a progressive disease and its course can be ruthless.

Once the damage is done, there’s been no hope of reversal. But now this recent look at growing myelin shows some potential for humans.

More than two million people--two to three times more women--have multiple sclerosis (MS)--the leading cause of neurological disability among young adults. What is their prognosis?

“We don’t really know what an individual’s prognosis will be when we first diagnose the disease,” relates Dr. Adi Vaknin, Senior Neurologist at Hadassah Hospital Ein Kerem. That is because there is so much heterogeneity in outcomes, she explains. While 15 to 20 percent of MS patients do very well, 50 to 70 percent need strong medicines to live a quality life. It is this uncertainty that has led Prof. Vaknin to start a biobank with which to study clinical outcomes for newly diagnosed patients. By identifying a set of proteins (biomarkers) within an individual’s peripheral blood, Dr. Vaknin and her research team have been able to predict, for example, a patient’s response to interferon, a common treatment for MS.

Dr. Adi Vaknin

The past 15 years have seen the development of very effective medications to treat MS. Currently, Dr. Vaknin reports, there are 10 medications available, but their effectiveness varies from person to person. “There is also a limited time window to start treatment,” Dr. Vaknin says, “because if you miss that window, some of the medicines are not very effective.” There are, however, two new medications on the market, she notes, specifically designed to treat progressive MS.

One common thread in MS is the degeneration of myelin, the sheath that protects the nerve fibers. Dr. Vaknin is researching the ability of certain proteins, found in the fluid surrounding the brain, to renew damaged myelin. Being able to rebuild myelin in MS patients is only in the research stage--though she estimates that “it will happen in the next five years.”

In the meantime, what advice does Dr. Vaknin have for those who suffer with MS? She recommends 2,000 units per day of Vitamin D--particularly found to be effective in preventing the occurrence of the disease in any offspring. Dr. Vaknin also suggests exercise and a healthy diet--and no smoking. She adds living a less stressful life to the list, but acknowledges that this “is not so easy to do.”

Genentech’s Ocrevus is an approved MS therapy that targets the CD20 protein located on the surface of B-cells, targeting the cells for destruction. B-cells are immune system cells involved, for example, in the production of antibodies necessary to fight off infection.

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At the AAN meeting, researchers reported that in MS patients, treatment with Ocrevus decreased the ability of B-cells to activate other immune cells, improving the rate of MS attacks. Penn Medicine neurologist Amit Bar-Or, MD, presented these findings, which showed that interactions between different classes of immune cells, such as B- and T-cells, promote MS attacks.

Vaccination against infections is an important part of the management of patients with MS. So, in a second study (NCT02545868), researchers investigated the impact treatment with Ocrevus has on patient response to vaccines.

Abstract

The landscape of multiple sclerosis (MS) treatment is constantly changing. Significant heterogeneity exists in the efficacy and risks associated with these therapies. Therefore, clinicians have the challenge to tailor treatment based on several factors (disease activity level, risk of progression, individual patient preferences and characteristics, personal expertise, etc.), to identify the optimal balance between safety and efficacy. However, most clinicians have limited education in decision-making and formal training in risk management.

Together, these factors may lead to therapeutic inertia (TI); defined as the absence of treatment initiation or intensification when therapeutic goals are unmet. TI may lead to suboptimal treatments choices, worse clinical outcomes, and more disability. This article provides a succinct overview on factors influencing TI in MS care.

In this video Aaron Boster, MD, shares his top 8 tips to help you quit smoking tobacco. These are the same times he share with people at the OhioHealthMS clinic, and he hope they help you in your quest to quit!
Quitting smoking has a special importance amongst those with MS because smoking speeds up their disease process!
1. Understand WHY It matters to YOU. Beyond knowing that quitting tobacco lowers risk to develop MS and slows MS if you already have it I review several other medical, social and financial reasons one might consider quitting. which ones apply to you?
2. Understand Psychology of quitting. I review the 4 phases of quitting and help you sort out which phase you’re currently in. I review the low long term success rate of “cold turkey” quitting and arm you with the knowledge of “3, 3 & 3” to help you fight cravings and withdrawal. I also review when it’s best NOT to try to quit tobacco.
3. The value of certain prescription medications to assist with quitting, including Wellbutrin, Chantix and nicotine supplementation. Specifically I review patches, gum and how to vape to quit tobacco!
4. Success is handed to the well prepared.
5. Identifying triggers and making a plan to remove them
6. Prepare a plan to combat 3minute cravings when they occur.
7. I discuss the value of small changes to your lifestyle, changing routines and hangouts, the value of exercise during quitting and more.
8. Tip 8 is the most critical tip. Take notes on this one, it’s important.
We'd love to hear your thoughts. Please share your comments and questions below!
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SHARE this video: https://youtu.be/jcUKtAMKSnc

Multiple Sclerosis and MRI Claustrophobia: How to beat MRI Claustrophobia
Are You Claustrophobic in the MRI scanner? Here is a tip to make the scan more tolerable.
Note: SOME ONE ELSE MUST DRIVE YOU TO AND FROM YOUR MRI. Also make sure this tip has been ok'd by your prescribing clinician. Lastly, this video is only for educational purposes.
Step One: Make yourself exhausted the night before. Literally limit your sleep to less than three hours. (remember: someone must drive you to your scan the next morning)
Step Two: Take 5mg tab of valium (your provider must prescribe this for this purpose before the scan. Only do this under their direction and supervision).
Step Three: when you lay down on the MRI gantry, CLOSE YOUR EYES and DON'T RE-OPEN THEM for any reason!
The result of no sleep, valium and laying down flat with eyes closed...is often a nap and an easy MRI scan!
What works for you? Might your try this? Share your comments and please leave your questions below! #WeHave MS.
NB: this video was for educational purposes only.

SYMPTOMS of MS

In multiple sclerosis , damage to the myelin in the central nervous system (CNS), and to the nerve fibers themselves, interferes with the transmission of nerve signals between the brain and spinal cord and other parts of the body. This disruption of nerve signals produces the primary symptoms of MS, which vary depending on where the damage has occurred.

Over the course of the disease, some symptoms will come and go, while others may be more lasting.

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A web-blog (formerly known as Stu's Views and MS News), now published by MS Views and News, a patient advocacy organization. The information on this blog helps to Empower those affected by Multiple Sclerosis globally, with education, information, news and community resources.

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"Stu's Views & MS News" / 'MS Views and News' DOES NOT endorse any products or services found on this blog. It is up to you to seek advice from your healthcare provider. The intent of this blog is to provide information on various medical conditions, medications, treatments, and procedures for your personal knowledge and to keep you informed of current health-related issues. It is not intended to be complete or exhaustive, nor is it a substitute for the advice of your physician. Should you or your family members have any specific medical problem, seek medical care promptly

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